Don't Let Endometriosis Kill Your Sex Life

Endometriosis can make sex extremely painful — often leading those suffering from the disorder to forego sex altogether — but an OB-GYN tells Healthnews that there’s hope for those who wish to have a fulfilling sex life while living with endometriosis.

Jenny has struggled with pain during sex since she first became sexually active at the age of 19. Now, at the age of 27, she says she experiences discomfort or pain during roughly half of her sexual encounters with her long-term partner.

Jenny, whose real name has been changed to preserve her privacy, is currently in the process of being tested for endometriosis, though her doctor has said all her symptoms align with the disease, and she feels confident that she has it.

“Endometriosis definitely affects my life in the bedroom,” she tells Healthnews. “Sexual intercourse with my partner sometimes really hurts, which is no fun at all — pain is not sexy.”

But according to OB-GYN and Flo Health medical expert Sameena Rahman, M.D., there is hope. Rahman says there are a variety of ways that individuals with endometriosis can manage their illness and take steps to enjoy a more fulfilling, less painful sex life.

What is endometriosis?

Endometriosis occurs when tissue similar to the lining of the uterus grows outside the uterus, causing inflammation and the formation of scar tissue in the pelvic region and, at times, other parts of the body. While treatments exist, there is currently no cure, and the causes of the disease are still largely unknown.

The World Health Organization (WHO) says it affects roughly 10% of girls and women of reproductive age globally — or 190 million people — though it is an underdiagnosed disease, and the real number may be far higher. It can begin as early as the onset of someone’s first period and can last until they reach menopause.

Endometriosis causes severe pelvic pain, and it can also lead to fertility issues. Many with the condition, including Jenny, report experiencing extremely painful cramps and very heavy bleeding during their period.

“The first two days of my menstrual cycle are absolute hell — it feels like someone is beating up and stabbing my uterus and lower back,” she tells Healthnews. “Having plans or trying to live a normal life feels impossible on those two days, and I’ve missed school and other important commitments because of my cramps. There have been times when I thought about calling 911 because I felt like I was dying.”

Why endometriosis causes painful sex

Along with severe period pain, endometriosis can also cause pain during and after sex. Some studies suggest between 40 and 80% of those who suffer from the disease experience pain related to sex.

According to Rahman, the infiltration of the endometriosis implants to the back wall of the vagina, causing fusion and adhesions of the rectum to the back wall. With these adhesions/scar tissue, inflammatory factors can lead to an increased density of nerve endings, and this can cause pain with deep penetration.

The same inflammation and nerve endings can also accumulate in the front part of thevagina at the vulvar vestibule — a thin piece of tissue between the labia minora and the vagina extending to the urethra and the perineum — she says. The vestibule is a unique piece of tissue affected by hormones, inflammation, and pelvic floor muscles.

Rahman says those with endometriosis also acquire an increase in nerve endings and Mast Cells at the vestibule cause neuroproliferative vestibulodynia — which is a pain at the entrance of the vagina.

“So with endometriosis, you not only can have pain at initial penetration, but pain with deep penetration,” she says. “With this much pain accumulating, you can develop dysfunctional pelvic floor muscles and this can further contribute to pain and sometimes make penetration not feasible.”

Medical treatments for endometriosis

The first step to improving your sex life with endometriosis, Rahman says, is getting treatment for your illness, whether it be medical or surgical.

Treatment may include surgery by a trained endometriosis surgeon to remove the implants causing pain, and it may include removal of the vestibule or treatment of vestibulodynia by a trained sex medicine specialist.

She says pelvic floor therapy should also be part of the treatment plan, and vaginal botox can also sometimes help with pelvic floor dysfunction as well.

“When treating sexual pain, it should be done through the lens of a bio-psycho-social approach, including sex therapy and cognitive behavioral therapy,” she says.

What you can do to help with pain during sex

But there are also steps you can take in the meantime so you can still enjoy sex while living with endometriosis.

Rahman recommends using lubricant to help ease the pain and trying a variety of different positions to figure out what feels good and what doesn’t. She also suggests focusing on non-penetrative sex to experience pleasure without pain. You may also be able to time sex so it doesn’t fall during your period or any other time of the month when you might experience more pain, she adds.

“Understanding what feels good and what is painful is essential,” Rahman says.

If you’re experiencing pain at the entry of the vagina, she says applying lidocaine can sometimes help, and a device called the Ohnut can help to buffer the penis from deep penetration if that’s what’s causing you pain.

Rahman says paying attention to the mind-body connection — meaning how your thoughts and feelings impact how you feel physically — is important here too, as it can help you tap into other pleasures to overcome the potential pain.

“Breathing and meditative techniques are helpful,” she adds.

Communication is key

Jenny has been with her partner for two years now, and she says she still sometimes hesitates to tell him she’s in pain because she doesn’t want to kill the mood or make him feel guilty for hurting her. But she’s slowly learning that communication is extremely important.

“It’s not fun to tell my partner that he’s hurting me, but I need to be honest, and we need to have these important conversations,” she says.

Overall, Jenny says struggling with painful sex has actually helped foster better communication in her relationship by forcing her to speak up.

Communicating her needs, she says, has also prompted her cisgender male partner to take the time to understand her anatomy and what is going on in her body, allowing her to feel comfortable telling him about her symptoms. They’ve had conversations about the possibility that she may be infertile, and he knows to give her a little extra support during the first two days of her period.

Communicate with your sexual partner. If the person you’re having sex with isn’t understanding, then it’s 100% not worth sleeping with them. If they don’t care to understand your vagina, then they shouldn’t have access to your vagina.

Jenny

Hope for better healthcare

For people with endometriosis to enjoy better sex lives — and better lives in general — Jenny says the way the medical system views women’s pain also needs to change.

She has been told that “periods hurt sometimes” and “some people experience terrible cramps” over and over. She is now 27 years old without an official diagnosis, having been told more times than she can count to simply take Advil.

“People with uteruses need to advocate for themselves, which can be so frustrating when doctors don’t want to listen,” she says. “I hope I can soon get an accurate diagnosis that will validate everything I’ve been experiencing for over 10 years.”

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